November is National Diabetes Awareness Month: Lessons Learned About Feeding Your Baby

The most common question that I have been asked is about the diagnosis of Type 1 Diabetes in both of my daughters.  The question is usually blanketed in the concern of whether I breast-feed or bottle feed or if I think my early feeding days caused a diagnosis.  To answer the question, I usually share that I raised my children with two different ways of feeding early through infancy, yet both had ultimately been diagnosed with Type 1 Diabetes.  Sometimes that answer provides enough relief, but sometimes, parents walk away with continuing concern over what they did or did not do.  With November is National Diabetes Awareness Month, I wanted to help families by eliminating any concerns they may continue to harbor by sharing our personal feeding journey.

Thinking long ago to when my oldest daughter was born, I remember having so many well-intentioned people sharing advice, thoughts and opinions about the best ways to raise a child.  I was grateful as having the multitudes of advice sharers on hand, as somehow it made for a kind of newborn insurance policy.  I knew that even if I didn't know what to do, I could call any number of friends that had 'been there, done that' and get the answer that I needed.

Those early feelings of insecurity that manifested in collecting my advice sharing friends intensified after delivery.  As a first time mom, I had a difficult labor that required a lengthy recovery after our precious little girl was born.  Without going into major details, there was a bit of trauma in the way that my daughter entered into the world and that trauma fed into my own worries and anxiety of carrying for a baby.

Not knowing how I would be feeling, I had asked for a close family member to stay at our home for the first two weeks.  My husband and I had taken multiple birthing classes, read a million childcare books on modern parenting and prepared to try to recreate everything we had learned for our nursery.  Not surprisingly, there was an immediate clash between the family member, praised for her sage advice before our little girl's arrival and our freshly graduated parenting class ideals.  If you could see and hear friction, it would be a closed wooden bedroom door with the sounds of many, many tears on both sides of the partition.

The biggest and boldest issue causing the most tears was the way that we had decided to feed our little girl.  Leading up to the arrival of our child, we had planned and prepared for exclusive breast-feeding.  Meaning, there weren't even bottles on stand-by within our home.  We were well decided on the breast-feeding route and so there was no need for pumps, bottles or even pacifiers.  Trouble arose immediately with this plan as our little girl displayed difficulty with latching during our long hospital stay.  The nurse asked if we would like to clip her frenum (simple surgery for tongue-tie) or supplement with bottle feeding.  Horrified that our sweet baby might endure any pain after such an exhausting delivery, I declined and agreed to the first bottle of formula.  The nurse assured me that it was common for newborns and would not present future feeding struggles.  The advice that I was given was a reminder to keep trying and eventually our baby would easily latch.  After a few more bottles and another two nights, we were discharged and sent home with a well stocked cooler of prepared formula.

At home, despite our efforts including middle of the night calls to La Leche League, continued offering of breast only and then, frantically calling the on-call doctor every hour on the hour proved to no avail.   Flashback back to the closed bedroom door, and on that particular day, our visitor, feeling anguish over hearing baby and mama cry, had realized two sad truths.  First, no one likes to see a mother and baby struggle over feedings and secondly, there is no feeding and holding a baby that is breastfed.  Both of those were thoughts that never crossed our guests mind before agreeing to stay with us.  Her old-fashioned skilled thinking included the time she had spent as a mother, which were during 'pro-bottle-fed only' days.  So by the second day, she decided enough was enough and happily prepared bottles with an offer (and pressure) to feed the baby.

This led to more mothering tears and also, more worries and more nerves.  The easy answer was to accept the bottle (and I did) but with a hefty dose of anxiety, guilt and shame for not feeding my sweet baby in the way that I had tried and wanted to achieve.

By the third day, our guest left (more tears) and I was able to try to reconcile my different feedings by offering more and more bottle feedings.  Visually, our baby was gaining weight, sleeping better and even giving those adorable 'too young to smile' smiles. By the end of the second week, with my milk drying up, I recognized that bottle feeding was doing 99.9% of the overall job.  I also recognized that it was doing a wonderful job.  Dare I say that I had the sweetest, happiest baby on earth? Clearly this was the best for our baby.

Time marched on and just a bit over a year later, I was pregnant again.  This time, we took a very fun and silly parenting class that catered to more seasoned parents as 'A night away from toddlers'.  The overall tone from the instruction circled around the thought that just feeding your child was best (still makes me laugh) and that regardless of how you chose to handle breast-feeding, bottle feeding or some sort of combination, parents are doing a great job. Not surprisingly, even after my first delivery, for the second, I felt relaxed and ready.

Perhaps some of that positive energy helped.  Immediately, I was able to breast feed without any issues.  In fact, feeding went so smoothly, that I spent about 1.5 years doing it.  When it came time to wean, we were both ready and the end felt natural and complete.  While completely different than our first experience, this was also best for our baby,

I shared my story after diagnosis and now with the parenting community because all too often, we look at ourselves to blame when what we originally envisioned in feeding our babies doesn't work out according to our plan.  When unimaginable news like the diagnosis of Type 1 Diabetes, an autoimmune disease with no known origin or cure, came into our lives, once again we looked for what, we as parents, might have done wrong.  We blame ourselves for what we did, or didn't do, as that may have somehow caused our child's diagnosis.  That's not only unfair but defeating to our future recovery.  The honest truth is all parents are trying to do the best that they can for their babies, families, and world.  However you choose to feed your child, will always be the best thing that you can do for your baby,

If there is proof in doing our best, all I have to do is to look for it in the eyes of my daughters; both are successful, well-rounded, accomplished and most of all, loving, sweet and kind.

Our sweet girls are our 'best' part of life.






To learn more about feeding your baby,
visit Honest.com/feeding

#ndam #kids #natsweetsisters #diabetes #kidsfirstdiabetessecond

November is National Diabetes Awareness Month: Lessons Learned About Sleepovers

October was a big month for our youngest.  Not only did she officially turn 13, but she also had several friends that celebrated birthdays during the same time frame.  Since all of the girls are wonderful friends (about a dozen teenaged besties in total), large, fun sleepovers were held to celebrate the big days of each individual girl.  To our youngest daughter, this was easily the most exciting time of year.

Our 'rules' for sleepovers are fairly straightforward.  I have posted stories about it here and here.  As the girls have grown, plus with the addition of new technology, we as a family have adapted the game plan to better suit all of our needs.  Mostly, I need to know that they have caught the low before it gets to a ridiculous number that would require mom to drive like a maniac to bring them juice and glucagon.  On their side, they need to bring a charger for their cell phone because nothing is worse than not being able to snap chat and yes of course, read those Dexcom Share numbers.

For the first sleepover, the girls were invited to a local movie as part of the activities.  The family borrowed a large mini-bus and impressively had all of the girls safely riding together to and from the theater.  Our youngest daughter followed her 'mom sleepover instructions' to text me just as she began to treat a 90mg/dl blood sugar (knowing that a drop was headed her way) and then called me right before bed time to review her bg, any IOB and to confirm that next to her sleeping bag were safely stored juice boxes (just in case) and her cell phone both plugged in and charging.  The next morning, she happily came home and promptly took a nap as the girls were well awake past 3:00 a.m..

During the second sleepover, our youngest daughter planned a night-time scavenger hunt throughout the neighborhood with her large group of friends.  Returning back home after running around, the girls sang karaoke, danced and played air hockey.  Activity stayed high throughout the evening and the girls had trouble settling down.  Somewhere around 4:00 a.m., the last one finally went to bed.  However, since it was at our house, it was easy for me to help discreetly guide extra snacks for pesky lows and to give not so subtle reminders to the girls TO GO TO BED.

By the time the third sleepover in a row rolled around, our youngest was a bit short on sleep and attitude.  Various hormonal factors played into the not-so-sweet attitude and her blood sugar was already in a whirlwind before the evening and before leaving our home.  I should also mention that the day prior was spent at our quarterly endocrine appointment and while I can't say exactly why this is, the attitude towards T1D is always more upset than what would be typical.  With the perfect storm already brewing, we sent our youngest daughter on her way with extra snacks, juices and a birthday present for the party.

This is where I am going to share what I did to further contribute to the forthcoming mayhem...

• I did not check her blood sugar infusion site to see if it looked good or needed to be changed.
• I did not check her insulin cartridge levels within her pump.
• I did not send her with extra insulin.  
• I did not spell out a specific consequence for not communicating with me.

From those missing items, if you are parenting a child that lives with T1D, you can probably imagine what happened but I will share the full story.  As a parent, I needed a reminder to myself that no matter how adult she may act most of the day, that I am still her reminder for many things - the above list is probably the most important and well, I blew it.  

First, our youngest started to go low, treated on her own and thought that we as her parents would figure it out on our own.  However, her Dexcom Share CGM was in the 'sudden drop' mode of two arrows pointed downward and despite my effort to not call her, when the number flickered at 41 mg/dl, I started dialing like a mad woman.  First our daughter, than the sweet hosting mom and finally, friends and friend's parents.  True story.  I actually texted the mom of her friend in hopes of getting daughter to respond.  While that was happening, my husband was roaring out of the driveway on his way to the house to get her.  Fear.Makes.Parents.CRAZY!

And then the text that I received, "Calm down.  I am fine."

Anger.Makes.Parents.CRAZIER!

At that point, an angry call led to an unhappy daughter that promised us she would communicate throughout the rest of the night and a grumbling, upset parent duo that are arguing over what to do with the child causing the chaos.  No fun at all.

However, close to midnight (and for a change all of the girls were feeling exhausted), our youngest suddenly realized that she was in trouble.  On her bedtime call to me, in listening her to ramble about various things, the tone in her voice was worried.  Finally, a bit of questioning prompted an admittance that her cartridge beeped a low-reservoir warning.  Adding to that, her blood sugar started to spike as she had made a decision to not dose when correcting the low with goodies and she had silenced her CGM by accidently restarting it (requiring a two-hour warm-up).  With the pressing need for insulin looming combined with her worry about how much insulin to correct with, she broke down on her cell phone and agreed to return home, missing out of the rest of the fun party.  

The kicker?  Before she went to sleep in her own bed, I checked her BG and it was mid 500s, about 250 points higher than what she thought or even what her CGM had been reading just a half hour before that.  We know that her thinking was impaired as was her ability to sense futher highs and lows.  We quickly changed the infusion site and saw it was red, irritated and bent at the tip.  I gave her an injection to bring down the high quickly and stayed up through the night to watch for ketones, extra boluses and crashes.  By morning she was in perfect range, feeling a bit of a diabetes hang-over and also very sorry for her attitude and actions.

As a result, the punishment for the situation was resolved before we even woke.  Leaving the party had been pure torture to our daughter and a reminder to all of us that we need to be more clear on expectations, increase our communication to one another and utilize a checklist of what should occur for future sleepovers - including check on insulin needs and infusion sites.  

I'm sharing my learning with you as it does take a village with T1D.  I am so happy that my daughters have friends that are willing to have our girls over to spend the night, despite the worries that come along with T1D.  This past weekend, our daughter was invited again to another friend's house and the night went just as it should... kids first, diabetes second.  <3 

#NDAM #Sleepover #Natsweetsisters

November is National Diabetes Month: Lesson Learned of Keeping Perserverance

Tired of talking T1D? Check out the Diabetes Emoticon App by HealthDesignBy.Us

Here is a true confession:  Sometimes, I really hate talking about T1D.  

I confess this because over the matter of days into weeks, leading to months, I have been dragging my little fingers over to the keyboard and feeling the worst case of writer's block ever imaginable.  At the same time, I have been scrambling to keep up with my growing teens as they embark on new and greater independent adventures.  

All of this has felt completely overwhelming.  So much so, that I have struggled to find the words to share the massive highs and lows they have experienced while continuing to remain upbeat and positive for the girls.  Sometimes, I can't even think about what happened because I am already moving on to the next big, more adult-ish topic.  All of their learning seems to be come fast and furious.  This is just so different than grade school or preschool or even toddlerhood.  It's hard to even explain.  

And they are really good kids.  That's the kicker.  Great kids that have been dealt this extra card of 'DIABETES' on top of everything else.  Their life game is achieving amazing grades, scoring well on the SAT, playing the best golf that they can, joining community service organizations, managing the social connections and above all; staying in control of their diabetes.  

It's not much to handle, right?  

So sometimes, the scales tip more towards one direction over another.  Sometimes it is an innocent, "I forgot to bolus" or other times, it is "I needed to take the test and couldn't pull out my phone to check my CGM."  There are decisions made on "It worked last time" or "My sister does it that way."  There are understanding supporters and once in a while, a unsympathetic adult that blocks their route.  All of these things lead to learning and often, mom or dad to help intervene.  

What I have come to realize is this new phase of life is the final push of learning before I set them (mostly) free.  I once read a quote about why teens struggle to deal with so many new situations that create conflicts and demands during ages 13-18.  The quote (paraphrasing here) shared something about the reality that if they were good all of the time, parents would never let them willingly go off onto their own.  I suspect that this is true.  There are days when I am so tired that I secretly wish for college to come that much sooner just to give us some space.  Then, I shudder because with that experience will bring an entirely new set of challenges including the one I dread the most, "THE NEVER ENDING SLEEPOVER."  The other sharp reality is that none of us are quite ready for that.

But we will be.

As I have watched all of the good and the very discouraging unfold around the girls, I now understand that this kind of learning that brings about both failures and success is the most important lesson that I can teach them.  Most of all I learned that my perseverance to try yet again, is the best teacher yet.  

As November is National Diabetes Month, I want to share some of our newly discovered lessons.  Tune in tomorrow, November 8th for lessons learned on sleepovers. 

#ndam #T1D #november #natsweetsisters

Acknowledging the Truth

There are times when parenting is hard.  Surprisingly, it is not the times where I am disciplining, directing or even disapproving (imagine all sort of situations where any of those might apply and I have probably had to deal with it from toddlerhood to teens).

Hard times within parenting seem to come when I am the least prepared of what to say or how to react to what I am hearing.  Getting to the truth - in my child and even in myself - is at times, the hardest of all.

"Yes, your goldfish has died.  I'm so sorry.  Swimmy lived a good life.  No, he can't wake up or swim or be alive."

That situation actually happened.  And it happened about five times over as we became 'that goldfish murdering family' that somehow, despite about $200 in gear, replaced twenty-five cent fish on a weekly basis.  Our hopes of having at least one survivor and even better, a happier ending to our week were dashed again and again.  Sadly, we had to explain the truth of the Swimmy situation to the sweet little faces that stared hopefully into the bowl.

And wow, was it hard.  There were tears and I know we needed some time to sort through it.  Even with fish, there is a natural process of grief and overcoming loss. To this day, our youngest, the most affected, talks lovingly about her Swimmy x5.

A few weeks ago, our daughter wore a pair of new shoes to school.  Much walking around the large campus ensued and by the end of the day, an angry blister appeared.  As she is a teen, the thought to share what had happened to mom, didn't occur for a second.  Despite the discomfort of wearing the shoes, a second day of walking prevailed in the name of fashion.

I'm underlining this for myself as she is a teenager and I am sure I did the same thing.  Raising daughters has reminded me time and time again of what I did to my mother. If you haven't called or begged forgiveness from your mom, this is your reminder too!

By the third day, the sore looked angry and felt feverish as a slight infection had started to work into the cut.  Not properly cleaned or bandaged, while playing her golf, a bit of dirt and debris had managed to infect the heel.  In addition, a second and third area near the toe had started to blister.  Later, we found out that socks were not worn as it would have ruined the look.

Again, go call your mother. You are sorry.  I don't even know what for.  But I am sure we all did the same thing. 

Tempted as I was to just release the shoes into the glorious secret parenting holding area called the garbage can, I decided to have a truthful conversation about the need to be careful with sores and especially sores on the feet.  The first go was full of gentle reminders of how to clean a wound, how to avoid complicating the sores by taking a break from the shoes and ultimately the ability to understand that some shoes are just cheaply made and may not ever fit well.

While rolling her eyes and shaking her head', she wanted me to know that I was over-reacting.  More than anything, she wanted me to know that she had it all under control and that she was already aware of the situation and had planned a way to manage it so she could still wear the shoes.  When pressed, there was no plan and no attempt to do anymore than to keep wearing the shoes because they went with everything.  Plus, she had gotten compliments - which in highschool is the equivalent to a raise.

Here's the thing, I could have gotten mad, lost the message and focused on her attitude but I knew that it was probably time to come come clean and share the reality of T1D complications like diabetic neuropathy.

When she calmed down, we went to the computer together and looked up preventative foot care for diabetics and spent some time discussing how a situation like a simple cut on a toe can spiral out of control into a long term issue with devastating consequences.

She explained that while she knew some of that from things that I had said, she didn't really believe me until we read it together.  Just like when we were preparing for Paris and I insisted on wearing our valuables in a protective cross-body bag, only when she witnessed pick-pocketing near a train station, did she believe that it could (and did) happen.

This is how a teen really thinks.  If anyone ever wanted the answer to how to get them to listen and respond, you must first acknowledge the truth.

It wasn't the conversation that I wanted to have.  I think one of my protective measures with parenting T1D is to avoid scary issues around all of the 'what-ifs' and 'could happens'.  However, the reality is that I have a teen that is now at the age where her care is shifting more into her own hands and less into mine.  It took three full days for me to understand the effect of the shoes and if it hadn't hurt to the point of limping, I might not have been aware until even later.

Teaching is the acknowledgement of not just what we hope for, but what we know to be truth.  Even if it is hard.

Squirrel Safety Makes Us Nuts

The days have been flying by.  Our oldest is in her sophomore year of high school and our sweet ‘baby’ is enjoying her last year of middle school as an 8^th grader.  With the usual flurry of activity to launch both of them into the new school year, we have had review meetings for 504s, Safe at School and Squirrel Safety.  Yes, I did make that one last one up, but it surely feels like squirrel safety in the sense that we spend approximately one full day on planning routes to safe areas within the school for extra glucose, creating low glucose boxes equipped with enough sugary foods to satisfy an entire village and hiding them so that the said village, does not eat everything should they come across it. 

It’s an emotionally draining endeavor.  I’m not sure how to describe thinking about the worst possible situation, having a reenactment and then, moving along to something light-hearted like a discussion of the Americans with Disabilities law for accommodations.  

And yet, all of us with children that live with T1D do this every year. 

The irony is not lost on my girlfriends.  They understand that while they giggle at marketing messages which showcase parents happily pushing grocery carts of school supplies, I start to wince.  

The reminder isn’t joyful that school is about to begin, but more along the dreaded thought process of:

Did I get my Diabetes Medical Management Plan signed?

Will the school meet to review our 504 plan before my girls start?

How will my child wait until the afternoon to eat when breakfast was 8 hours earlier?

Who will share this information with the bus driver?

What is a three-day field trip?  Are you kidding me?!  Overnight with T1D!!!

The list of worries is long and deep.  Ten years later and I still lose sleep over the anxiety of sending both of my girls every year.  I know that should there be something that they need, there is a reality that despite our efforts in training staff, they may need to handle it completely on their own.

This isn’t just a case of Mama Birdy feeling unable to let baby fly either.  Within our school system, though fully trained, we have approximately 50ish teachers and staff that are faced with hundreds of children that all may or may not need something RIGHT NOW.   

In balancing the need for my teens to blend (which they need to do) along with the necessity to be remembered (never sure until there is an emergency) is the reality that none of our plans are foolproof as T1D is this disease that tends to be elusive, never.doing.the.same.thing.twice kind of rule-breaker. 

If I am not sure what is to happen, how can I expect our teachers and staff to be fully prepared? 

The only way that we have managed thus far is to ensure that the girls take the lead in their own care and that we create a safety net to support them.   Tools like the Dexcom G5 and a cell phone have helped so much. 

Still, the anxiety is palpable.  It’s not just my own either.  The girls feel shades of worry from their own previous experiences. 

School isn’t home and so teachers and staff need to be taught to understand the need for classroom eating, bathroom breaks and even those cell phone beeps that alert to lows. 

Teachers and staff need to be able to share that information with their aides and substitutes because once they are gone and a stranger takes over, the classroom often becomes a wild west hang-out, and the substitute is left to the only defense that they have - suspension write-ups for violations like those cell phone beeps.  Even worse, often bathroom breaks and eating are denied.    

Yet all of this can be worked through and solved. 

We can share, teach and work through any issue with communication and grace.  Our girls are learning to speak up, to advocate and to be responsible.  The skills that they learn will take them through the course of their lives; to the unforgiving professor in college, to the misinformed colleague or manager at work and through every social situation imaginable. 

While starting school is never easy (for any one of us), we choose to focus on the outcome.  It’s one more learning opportunity before they start their next chapter.

One thing that I am sure is safe to assume:

We are going to need a nuttier squirrel safety plan.  

Yes, I know that's bad but I couldn't help myself.   Happy Back-to-school!  

Teddy Bear Clinic

A few years ago, the girls participated in a Teddy Bear Clinic sponsored by JDRF in Toledo, Ohio. If you haven't been to one, it is worth a special place on the family calendar.

For little children (and even big kids like me!), special Patient/Caregiver stations are set up by local area non-profits, medical staff and volunteers in an effort to demystify the patient care that goes on within doctors' offices, clinics, even hospitals.

During our visit, each daughter brought along their special Rufus teddy as a 'patient' to the local children's hospital.  As the teddy bears visited their medical staff within the specially designed stations, we watched as our daughters became more confident in what the bears 'needed'.  I remember my youngest, one who still is very quiet in new stations, boldly approaching an immunization station to request that her bear receive all of his injections.  As she held his stuffed paw, she carefully reassured him that he would be ok and it would only hurt for a moment.  A second more and a bandaid to keep him feeling better, and she was ready to move along - but now with a BIG smile.

Even though the room was filled with more adults than children, the confidence in care that radiated from the kids was palpable.  We had a blood draw scheduled for just a few days later, and while the tears didn't completely disappear, there was certainly less of them.  In our world, less tears is a major feat, especially when dealing with the anxiety and stress chronic diseases can bring.

Tomorrow, August 18th, as we go full circle, our two daughters will actually be running their own station at the Teddy Bear Clinic.  If you happen to be near Ann Arbor, Michigan and would like to visit the Hands-On Museum, look for the Naturally Sweet Sisters and their special Rufus bears.

Click HERE for more information on the Hands-On Museum Teddy Bear Clinic.

They promise to make sure your little ones' stuffed animals receive a clean bill of health and hope to give back a little bit of that same 'patient confidence' magic that they too, once received.

What Diabetes Gave Her

I've shared with you before of how our oldest daughter has a desire to persue a career as a doctor.  The discussion of becoming a doctor first came shortly after her little sister was diagnosed with Type 1 Diabetes (T1D).  Oldest daughter often focused on ways she could 'help' her sister through the multitude of pokes, prods and owies.  In the way that we have come to know only as her gentle gift of kindness, she did just that; Oldest daughter helped by learning the art of comforting and later, learning by asking pointed questions to know how to give injections and check blood sugars.  Over the years and throughout her own personal journey into the same land of T1D, Oldest daughter's desire of learning more within medicine never waned; only growing even stronger as her sister flourished.  Years later, she still has this deep seated conviction that she was needed to help.

A few weeks ago, while on the golf course, a smattering of stinging bees found a few of her teammates and even her own exposed arms.  That night I found her packing a first aid kit and explaining that she needed to be prepared for her friends as they counted on her.  While I preach kindness matters, I wouldn't have thought to tell her to do this.  I know it is something deep within that she feels.  

This summer, an amazing opportunity presented itself.  Our oldest was provided with a chance to attend the second annual ICAN Summit held in Barcelona, Spain.  I wrote a bit about how that went HERE.

The experience provided an insight into pediatric medicine around the world.  Oldest daughter had an up close and personal experience with children living with a variety of medical conditions as well as meeting and hearing from policy makers, patient advocates, nutritional experts and healthcare providers on the needs of pediatric patients.

Still, it is hard to explain what she was able to learn, see and take-away from the experience and how her desire to help others has started to come true.

The biggest question she often receives is "What does ICAN really mean?".

To answer in a way that only the power of viewing can have, today, a video was released that compiled the wonderful magic of the week to showcase how the power of children working together in a group like ICAN can indeed create improvement in the lives of others.

This is her world.

This is her way of helping.

And through this experience (and hopefully more to come), her way of helping to fulfill the need to make a difference.

Diabetes may have taken a few things from her life, but I am sure that it also gave her many more wonderful traits.

Now it's up to her to use them.

T1D Hereos - With Type One Diabetes, ANYTHING is possible.

New UK Prime Minister, Theresa May

Earlier this week, I shared the news that both of my little ladies won a golf tournament.  That particular post sparked many private and public messages written with a tremendous amount of positivity and encouragement of what amazing things our loved ones may achieve while living with Type One Diabetes.

I loved it.  Even more, the two Naturally Sweet Sisters said it was exactly what they needed to hear to stay focused on their own goals - which (of course!) is a college experience that includes a scholarship to play golf.

To keep the exciting momentum going for all of our friends that live with T1D, I thought it might be fun to share some of the inspiring adults that live with T1D as a way to continue to showcase the ever-present encouraging thought that 'anything is possible'.

• With T1D, You can run a country!  Thanks to Ms. Theresa May, UK Prime Minister, as our newest community role model effective July, 2016.  To read more, check out http://www.medscape.com/viewarticle/866060?nlid=108247_3041

• With T1D, You make the highest legal rules for a country! Supreme Court Justice Sonya Sotomayor not only makes decisions for citizens of the United States, but she decides how to manage her T1D each and every day.  Want to know more?  Check out http://www.diabetesforecast.org/2013/jul/sonia-sotomayor-her-life-with-diabetes.html?referrer=https://www.google.com/

• With T1D, You can be a professional athlete!  Jay Cutler, Scott Verplank, Charlie Kimball and many more are living their athletic dreams through careers around the world.  All it takes is a lot of practice and you could be doing the same! https://en.wikipedia.org/wiki/List_of_sportspeople_with_diabetes

• With T1D, You can act, dance and sing!  First there was Mary Tyler Moore and that opened the doors to many celebrities living with T1D.  It's well known that Nick Jonas, Crystal Bowersox, Brett Michaels and Damon Dash all have had success on the stage.  For more inspiration, visit http://www.everydayhealth.com/diabetes-photos/celebrities-with-type-1-diabetes.aspx#05

• With T1D, You can be Miss America!  Thanks to Nicole Johnson, our world is filled with the brains and beauty of many young women that have created philanthropic endeavors while furthering their education.  

For all of these wonderful adults (and even more listed HERE), nary an insulin pump nor an injection will ever hold them back. 

As I continue to remind my own girls, with T1D anything is possible!

Feel free to share your own positive 'With T1D Anything Is Possible' story in our comments.  We would love to read them.  

Thank you for sharing! 

T1D looks like... A Golf WIN!

What does T1D look like?

A Golf Tournament Win!



                         




Take that T1D!

Believe In Yourself - At Any Age

I have this very vivid memory of bringing our youngest daughter home after her long post-diagnosis hospital stay.  Our lives were a whirlwind of fear mixed with learning with a ton load of grief.  Through all of those emotions, a little bit of my father’s daughter reared up and on one manic recovery day, I paused long enough to make a vow; Type One Diabetes was not going to hold our daughter back. 

And it hasn’t.

Nor will it for our oldest daughter.  Not then.  Not now.  Not ever.

To underscore this point, our oldest daughter wrote an essay and applied for a trip abroad as an ambassador for the University of Michigan Mott Children’s Hospital Teen Advisory Council as a member of ICAN (International Children’s Advisory Network) for the 2^nd Annual ICAN Summit to help improve the lives of all children within the medical community. 

After months of planning and preparation, the big day finally arrived and our daughter flew from our home in Michigan to Paris, France.  As her chaperone (mom perk!), I was happily able to go along with her.  Our first hurdle was navigating international airport security with all of the necessary medical equipment and gear.  To mitigate loss risk, we packed insulin, pump and CGM supplies in separate carry-on and checked baggage.  We also packed a doctor’s letter as well as airline security rules about traveling with medical concerns.  Maybe it was Newton’s law but it seemed just by virtue of preparedness, everything went smoothly.  We breezed through Paris customs and blissfully spent a day as regular tourists.

Our next perceived challenge was transferring from France to Spain via another plane.  Once again, preparedness seemed to eliminate any obstacles and security went as smooth as could be. 

After a few more days, our first (and really ONLY) issue came to light at around 1:00 a.m. on a Sunday, the night before the official summit kick-off.  We had been to a concert venue earlier in the evening, danced and then, walked several miles back to our hotel.  Somewhere along the journey, oldest daughter lost her lancing device.  In Barcelona, ‘Pharmacy’ is atypical, stocking a variety of non-medical goods and not even readily available like the American-style CVS or Walgreens.  We knew we had to troubleshoot independently.   Just as I was starting to fret about how to fix the situation, a lightbulb went off.  Why not work through this scenario using our teenager as the lead?

I calmly looked at her and asked, “How would YOU handle this situation?”

With big eyes, she looked tearfully back at me and asked, “What do you mean?”

“Well”, I paused and gave her an encouraging nod.  “This very same situation could have easily happened back at home or at school or one day soon, at college.  How would you fix it?  What would you do?”

“I would call One-Touch”, she replied hesitantly.  “And maybe they could send me one?”

“Ok!  Let’s try.”  I nodded with an encouraging smile. 

Oldest daughter looked at her smartphone and found the US One Touch hotline.  Placing a call, she immediately connected to an on-call operator.  After a couple of moments of explaining the situation, she was able to understand that while the US One Touch company would love to help, they cannot send US medical devices overseas.  Instead, One Touch agreed to send a new lancing device to her home, which while helpful after we returned, did not help the situation she was currently in.   A few more attempts to reach the international One Touch hotline did not prove to be fruitful.  At this point, it was close to 2:00 a.m., so we agreed to manually poke a fingertip with a lancet (Which can I just share how sad that is? My heart hurt for her sweet fingers!)  so we could both get some much needed rest .

The next day, we went to breakfast and having to once again, manually poke her fingertip, our family-style breakfast table included several of the ICAN conference attendees.  One inquired about where her lancing device was.  Explaining tentatively of what had happened (which was quite difficult as she tends to be somewhat conservative of opening up in front of adults); our oldest daughter shared her new idea about heading over to the neighboring hospital to see if a lancing device could be procured.  She spoke quietly and I could see that she was uncomfortable with the attention on what she felt like was a problem that she had created.  Even though accidents happen, she took it to heart that the lancing device had been her responsibility. 

However, through her openness, a rainbow appeared.  That first conversation sparked another conversation about one of the researchers that was in attendance at the conference.  Certainly that person might have a connection at the hospital in Endocrinology that might be able to help. 

An hour later, oldest daughter found the researcher, agreed to meet in the hospital and was on her way to getting a new lancing device.

Later that day when we were able to have a break in the day, she came over and gave me a hug.  Thrilled with her new lancing device, she showed off her healing fingers.  “Look, no more redness.  How cool is that? She said with a grin.  “You know mom, I just proved that I can do this.  I can go anywhere and have anything happen and I won’t fall apart.  I am so proud of myself! “ 

Teary-eyed, all I could do was offer a hug. 

As she hugged me back she quietly said, “Take that Diabetes Monster.” With a victorious smile, she ran off to her next summit adventure.

The rest of the summit went off without a hitch.  Oldest flourished in the international environment.  She reconnected with friends, made new friends and revealed in the many learning opportunities.  T1D stayed quietly in the background, never daring to upstage her so that truly, she could be a kid first.  

Upon arriving home, one of my dear friends asked me if I thought oldest daughter could have made the trip alone.  I'm not so sure she could have but I am certain that she can (and perhaps someday will).  She has an air of confidence now and above all, she believes in herself.  

She Has It Too

Summer golf!

The girls have moved into the summer season of competitive golf.  This means that we have been traveling to various tournament locations around our state and watching as they complete a round of golf; typically lasting upwards of 5-6 hours.  

It's been exciting, challenging and inspiring.  Last week, both girls won their age brackets and collected first place trophies. Nothing short of awesome as this win was scored through 90+ degree temperatures as they walked and pushed their own clubs around 18-holes. While they were completely exhausted after the match, the very first words spoken came out as, "When do I get to play again?"

They love this sport.

However, golf has also been interesting.  There have been many blood sugar checks during their long rounds. Conquering this need to remain vigilant over T1D is sometimes a struggle.  No one wants to stop what they are doing, especially at intense times during the match.  As a result, both girls have had "I learned my lesson' rounds wherein T1D was not a priority and lows (or highs) surfaced too many times to count.  On those rounds, the scores were not their best and both girls knew that T1D interfered, even though it could have been entirely prevented.   

Through our learning, we also teach others.

Initially, we declared to the course judge that both girls had been dx with T1D.  Mostly, this is a discreet process as the only real reason to declare the information is to ensure that the medical equipment used does not become mistaken for GPS or distance measuring software.  While we are all entirely too familiar with the assortment of blood sugar meters, CGMs and insulin pumps, many are not.  If there was an issue, having T1D on file can instantly solve any concerns.  

As sisters, the girls have formed a unique bond in having a love for the same sport.  Yesterday, both girls had the luck of the draw to be placed into the same foursome for competition.  In golf, this is a rare treat for parents too.  Most often, they tee off hours apart and as such, a 5 hour competition can run closer to 8 hours by the time both girls are done with the course.

Before the match started, I noticed my oldest daughter casually checking her CGM, frowning and then with her typical, ninja-like skills, re-checking using her blood sugar meter.  A nervous dad waiting for his daughter to tee off, stood near me and stared as well.  I smiled, catching his eye and quietly explained that my daughter had type 1 diabetes.  His blank look gave no indication of understanding, so I further added, "Juvenile Diabetes" and then received a head nod.  I didn't clarify further as my statement was mostly spoken to help identify the equipment that she used.  

Not more than two holes later, as parents gathered a little further down the course due to the rule of spectators, our youngest paused to check her blood sugar.  There was interfering with the game or her fellow competitors, but it was noticeable in the sense that she walked back to her bag, pulling out her meter, poking a finger and reviewing the results.  The dad glanced back over at me with a puzzled expression and I nodded, with a friendly smile and sharing the answer to his unspoken question, "Yes, she has it too."

The IT factor.

Saying 'she has 'it' too' is not a new phrase for our family.  However at that exact moment of watching both of my girls as they navigated the difficult course, connecting with both the thrill of competing and the satisfaction of playing to their best of ability, without interference from T1D, I realized that they did indeed have 'it'.  

I have never defined the girls by their T1D, nor have they felt that a label needed to be added to their identity.  The reality is that both girls are so much more than a disease. This mindset that 'it' is an intangible, amazing combination of the desire to accomplish, to learn, to succeed, to fail and to try again, is what makes them special.  ‘It’ is the invisible stuff that brings out the best of kindness, generosity, strength and perseverance.  The 'it' is in both of my girls and because of that unseen bundle of qualities, both girls will continue to amaze the world with all of the things that they can achieve without limitations; especially without being limited by a strangers’ perceptions of T1D.  

Yes, they both have 'it'. 

The rest of the match went on without a hitch.  Oldest daughter completed one her best rounds and youngest daughter finished with a great score within her age group.  Even though the talk buzzed of golf, nothing to do with how they played or what they scored came into my mind.

Smiling proudly, as we walked off the course at the end of the day, I couldn't help but to think about how lucky the world is to know our daughters that have 'it'.

Patient-Centered Care

It's often the little things (or in this case, the big things) that matter to patients. 

In this case, a 12-year old presenting with an ongoing ear infection is prescribed amoxicillin. 

The prescribed treatment was perfect; a 10 regimen of antibiotics to thwart the bacteria residing in her ear. 

However, the patient can't swallow (nor could I as an adult) a pill this size. 

To a young child, a pill at this size causes fear, panic and frustration.  Even worse, there is a grave chance that the much-needed medicine won't be consumed, thereby negating the positive effects that brought it about in the first place. 

It is times like this that I am sure a simple process designed to remind the clinician, nurse or pharmacist of whom they are treating would have alleviated the entire situation. 

What if there had been a simple system prompt before the script was filled with a note on specific patient needs?  Something as clear as "Can patient tolerate pills?" easily would have remedied this problem.

This is why we need patients to be part of the system at the start of design; so 12-year olds aren't paired with pills meant for adults. 

Together, we can make a difference. 

#patientcenteredcare 

7th Grade Writing Prompt; Prompting Tears

This week, we are wrapping up another year of school.  It's been a hectic, busy, hyper-focused month and everything seemed to stall - besides studying, completing projects and taking final exams. Now that we are in the home stretch towards a long summer vacation, much of the work completed at school has been trickling home.

Dated September 16th, 2015, an English journal entry popped out of the myriad of school papers.  With wide eyes and while holding my breath, what I read was one of the most gut-wrenching parenting realities.  As I have shared, the start of the school year was full of 'forgot to bolus', or 'forgot to check'.  Reading her thoughts provides a rear view mirror to the road map that I wished to have found sooner.

Middle school (and a new school for her this year) is tricky on the best of days.  While my first reaction was a wish to have intercepted her words sooner, I know that her inner heart was handled with love and kindness.  Taking a second look through that same rear view mirror, the sentiment that was expressed by her teacher, especially after having only been in class for a few weeks, was the perfect tonic to soothe her worry.  Even better than if the same words had been spoken by mom or dad.  Sometimes the words with the biggest weight and the most meaning, linger longer in the mind when it comes from someone outside of their comfort zone.  Like my girls have teased, I have to love them!  In this case, their teacher, does not.  The result? As we finish this long growth-filled year, she has moved away from the 'forgots', found her circle of camaraderie and eagerly awaits her upcoming summer adventures. She is happy.  She is loved.  She is ready.

If I could change one thing about my life... 

If I could change one thing about my life, it would be to not have type one diabetes.  I would like to not have it because it gets in the way sometimes.  I would like to have the life of a normal 11 year old girl.  If I did not have type one diabetes, I would eat so much food and not put insulin in.  I am a bit tired of people asking me what it is, but if I never had type one diabetes, I would never get that question again.  I know a few other people who have type one diabetes and I bet they would say the same thing.  Even though there is no cure, I am going to live life to the fullest. 

Teacher Response

Thank you for crossing that out.  There is no such thing as a "normal 11 year old girl".  Every single one that I have ever known is unique and special and one of a kind.  Including you. :)


xo

Weekly Warriors - Everyday is a T1D Day

Recently I read a Pinterest article advising how to manage a clean home.  Days of the week were provided with clear cut tasks designed to maximize effectiveness of maintaining perfection.  

The article made me laugh.  As a mom within a busy household, there is not an exact science to managing T1d.  

Each day brings out our inner 'MacGyver' as we fly by the seat of our pants in a world that can be unpredictable, weird and even scary at times.  

So tongue in cheek...  Here is my Betty Crocker look at T1D - Pinterest Style. 

On Sundays, I secretly change lancets. 

On Mondays, I use my ninja skills to add extra fruit snacks to their purses, so as not to be yelled at for invading their privacy.  

On Tuesdays, I make sure we have enough juice to power a NFL team to a winning Super Bowl.  

On Wednesdays, I sift through the endless paperwork and make sure we aren't missing homework, appointments or projects so I can write apology notes for being absent-minded after sleeping only four hours over three days. 

On Thursdays, I restock the kitchen drawer and add in a vial of Motrin for my migraine and a bottle of Tums for the over-stressed Naturally Sweet dad. 

On Fridays, I prep for weekend sports by creating a careful balance of sugar, protein and foods that may actually be eaten with less of a frown when one goes  'low' and needs to stop playing. 

On Saturdays, I download numbers and check for adjustments.  I also enjoy a cocktail. 😍

She Ordered Her Own Insulin: Her Own Life

Something that I have realized through the years is that when the elusive and often, unpredictable business of growing up happens, as a parent, you are never fully prepared.  

Shaking my head later in the day as I reflect, "And to think, it seemed like any other Tuesday afternoon." 

That day, after entering our beloved Tar-Jay, oldest daughter proceeded to walk around me, over to the prescription counter and calmly, yet carefully, place a request for a refill on her fast-acting insulin.  

Slightly surprised, I quietly watched and then, as she turned around, gave her a thumbs up in my dorky, mother.loves.what.you. just.did, way.  This promptly earned me an eye roll with a look that said, "My mother is such a dork."  

Ignoring the look, we pushed the cart away from the pharmacy, and I repeated the instructions to return for pick-up in about 15 minutes.  Oldest daughter patiently replied, "I know mom. 15 minutes."  She then distracted me with her chatter about the upcoming class council election, her friends and their current dilemma of how to manage the competitive campaigns.  Loving the inclusion into her world, I happily listened while pretending to shop.  

We rounded another aisle, with cute home items, and again, I was immersed in her world with chatter about her future apartment and how fun it would be to decorate the space, which of course included dreams of a New York City loft.  

Pausing as we passed grocery, I veered the cart towards canned items while glancing at my watch.  Fifteen minutes had turned into 20 and with the fear of the pharmacy closing, I teetered on forgoing the things I needed and running back to pick up the script.  

"Mom.  I got this.  Why don't I leave you here and go back to pick up the insulin?"  She smiled brightly as though it was part of a daily routine that we established.  The truth of the matter was that she had never completed this task, nor had she left me somewhere to shop.

Hesitating for only a moment, I agreed and off she went.  I watched her gracefully walk back through the multitude of product-filled aisles and brightly colored displays in search of the pharmacy.  

Collecting my items, I eagerly walked her same route, arriving just as she was signing her name on the electronic keypad with consent for having received her six vials of insulin; roughly three months of life.  

Her life.

Squinting my eyes a bit, it was almost like watching a younger version of myself.  She smiled, made small talk and nodded her head enthusiastically to whatever the pharmacist shared.  

She was clearly establishing her life. 

As a mother, I am not sure if I was ever fully prepared to see how quickly the days of childhood would recede.  For so long, it felt as though it was me and only me with the endless tasks of managing T1D.  This moment, so long in it's arrival, suddenly filled me with a sweet sadness at the subtle change of management.  We are supposed to teach, to let go and to quietly watch the transition of the childhood metamorphose into adulthood.

Which I will.  

I will because the beauty is seeing her accept, manage and own her life.  

What a wonderful moment to witness. 

Take A Stand Against United HealthCare and Medtronic: Diabetes Collusion Is NOT Acceptable - My Pump, My Choice!

Recently announced by United HealthCare is a unfathomable restriction that forces patients into using ONLY a Medtronic Insulin pump.  

This type of competitive bidding to earn insurance favoritism is akin to medical malpractice.  Since when did insurance earn the right to play the role of medical doctor.  


“Having diabetes isn’t a choice. How people manage it should be,” said Kim Blickenstaff, president and CEO of Tandem Diabetes Care. “Insulin pumps are not a one-size fits all solution. Selecting which pump is the best fit for a person to manage their therapy needs should be a decision made between a person and their healthcare provider.”

The diagnosis of Type 1 Diabetes arrives without a choice.  

However, the means in which Type 1 Diabetes is managed is all about choice.

From Melissa Lee at A Sweet Life; "We stand with the community in renouncing this kind of competitive bidding and high stakes collusion. We stand for choice, for precision medicine, for tailored care. This has been coming at us for years and now it’s here. If you’re not a UHC member, please realize that your payer is next on the list."

Taking away that freedom will result in a potentially life-threatening 'one-size-fits-all' approach that reduces patients to care that may not have been prescribed or tailored to their own personal health needs.  

"Our sense is that industry -- from manufacturers to physicians and patients -- will aggressively pushback on this policy change that allows no options for the patient in what is a very personal decision," wrote Danielle Antalffy, an analyst with Leerink Partners, in a research following the Tandem announcement. "We estimate that UnitedHealthcare represents 15% of total covered lives in the U.S."

United HealthCare Needs to Know that together we support the freedom of choice in our medical care. Contact information for the state of Michigan is provided below.  

Provider Relations 

Toll Free Phone: (877) 842-3210
Email: mi_pr_team@uhc.com

All other states may be found HERE.  United we stand with the DOC.   #MyPumpMyChoice.

Naturally Sweet Sisters Goldie Oldie : In the Spotlight (or Under a Microscope)

This is from the archives of Naturally Sweet Sisters but even though it was five years ago, it feels every bit as relevant as the day it was written and shared.  Hope you enjoy this look back.... 

Friday, October 21, 2011

In the Spotlight (or Under a Microscope)

My oldest daughter has a broken bone in her hand.  This most likely is not headline news to any of my reader-friends.  We are past the surgery, bone graft and new scaphoid insertion and are now working our way through a six-month recovery. 

Yes, this was not a simple bone set and release.  This was a complicated procedure requiring over three hours of initial surgery, with a second surgery scheduled, to be determined.

As a family, that means that we have yet another medical issue to deal with.

I use the term crawling under my rock quite a bit.  Here is why.

When you are labeled "that family", you know the one that has so-called problems such as "two daughters with type 1 diabetes", the last thing you want to be dealing with is more inane conversation from people who do not understand anything more than a runny nose.  You are in a virtual spotlight just by way of living.

With her arm in a splint/sling and with an insulin pump prominently secured to her hip, that spotlight shines even more intensely.  Wherever we go, it almost seems as though we are stepping behind a podium for an impromptu media conference. 

"Miss, Miss!", says a reporter who is cleverly disguised like a parent we know.  "How on earth did you break that?  What do you mean a bone graft?  I have never heard of such a thing!"  

Another suspiciously similar parent-reporter steps up, "Can you tell us what happened?  Does anyone know about this?  So you have diabeat-us and a broken hand?  Aw, nothing goes well for you honey, does it?" 

"Another problem?" says a reporter who looks a lot like our mail lady.

If the door for unsolicited comments was only cracked, it is now wide, wide, wide open. I can only imagine what it is like for my oldest daughter when I am not there, helping to deflect some of the questions.

Being under the spotlight leads us to another crossing in our journey of life... do we tuck our tails and head for the big rock? 
No, because we are stronger than this.  If we are in the spotlight, we owe it to ourselves to shine.  We answer the pivotal question of I don't know how you do it with a shrug and smile.

As 'that family' we are responsible for showing our children (and apparently the rest of the world) that neither a complicated bone break nor type 1 diabetes is going to get us down.  It might make us pause for a bit, but we will recover and move on, stronger than ever. 

I owe this to my daughter, who much like her mother, looks for a place to hide when someone starts in with the questioning.  I need to teach her the survival skills that she will use for the rest of her life.  Sadly, a broken hand and type 1 diabetes will not be her only tribulations in life.  She will undoubtedly face even more challenges.  Life, while beautiful and wondrous, can also be filled with strife and struggle.  Perseverance and defiance (along with a quick wit) will become a few of her many tools in overcoming these obstacles.

After the 99th question today, I took my daughter aside and told her to invent a story (not a lie) but a good, stop-in-your-boots-and-stare-with-your-mouth-hanging-open kind of story.  After a moment of shock, she looked at me and giggled, "You mean to explain how I broke my hand after climbing the Grand Canyon?  Or how the alligator tried to bite me after I climbed out of our bathtub?  Or should I just say that if they think this is bad, then they should really see the other guy?"

Now that's my girl!  Give those reporters something to write about! 

If that doesn't work, the space under my rock is always available.